Episode 159 | With Sarcoidosis half the battle is just getting to the doctor
Sarc Fighter: Living with Sarcoidosis and other rare diseasesShow Notes
Once you receive a diagnosis of Sarcoidosis, you have an answer. But that raises more questions. What medications should I take? Will they work? Is it the right medication? What complications could I face? Do I have the right doctor, or is the right doctor not in my local area? In many cases sarcoidosis means you need to travel to get the care you need. Your local doctors may not have enough experience to deal with your case. That was the situation for Royce Robertson. He spent tens of thousands of dollars just getting to and from his care. That's before he paid for traditional medical expenses. In this episode of the FSR Sarc Fighter podcast, Royce talks about raising money to help people offset the cost of travel. Show Notes Support Royce: https://stopsarcoidosis.rallybound.org/Team/View/172803/Cycle4Sarc
How to take the Veterans survey:
Log in to your FSR-SARC Patient Registry account. Go to your Dashboard or Surveys/Studies tab. Look for the Military Veterans Survey and click “Start” to begin. Please note – you will need to complete the Baseline Questionnaire before having access to the FSR Military Veterans Survey.
https://www.stopsarcoidosis.org/patient-registry/
MORE FROM JOHN: Cycling with Sarcoidosis http://carlinthecyclist.com/category/cycling-with-sarcoidosis/ Do you like the official song for the Sarc Fighter podcast? It's also an FSR fundraiser! If you would like to donate in honor of Mark Steier and the song, Zombie, Here is a link to his KISS account. (Kick In to Stop Sarcoidosis) 100-percent of the money goes to the Foundation. https://stopsarcoidosis.rallybound.org/MarkSteier The Foundation for Sarcoidosis Research https://www.stopsarcoidosis.org/ Donate to my KISS (Kick In to Stop Sarcoidosis) fund for FSR https://stopsarcoidosis.rallybound.org/JohnCarlinVsSarcoidosis?fbclid=IwAR1g2ap1i1NCp6bQOYEFwOELdNEeclFmmLLcQQOQX_Awub1oe9bcEjK9P1E My story on Television https://www.stopsarcoidosis.org/news-anchor-sarcoidosis/ email me [email protected] #sarcoidosis #sarcoidosisawareness #particulatematter
More from Sarc Fighter: Living with Sarcoidosis and other rare diseases
Jeanne Parson lives in California where she is fighting pulmonary sarcoidosis as well as cystic fibrosis. It can't be fun. She started noticing there was a problem where her daily walks became difficult. Now she spends as much time managing her healthcare as she does walking -- or playing in a band which she also loves.
Promising new research identifies three genes that may play a role in why people do or do not get sarcoidosis. Also a look at why hard work makes us feel better going all the way back to the old world philosophers, and how that might help you in your battle with sarcoidosis.
Brett Wittner has run a lot of marathons. A lot. But when her tried to make a comeback something was wrong with his lungs. Scans showed it was sarcoidosis. Yet, he is running the New York City Marathon as a fundraiser for the Foundation for Sarcoidosis Research. Listen in as he shares his story as a runner and sarcoidosis patient.
Kimberly Cleary lives in Chicago, where she is dealing with severe pulmonary Sarcoidosis. After a long path to diagnosis, she is working with her medical team to find a treatment that works for her. It has't been easy.
Susan Smith has cardiac Sarcoidosis. One day she was in spin class, and all of a sudden her life went into a spin. Sarcoidosis has raised its ugly head, and now she is taking things day by day as she works with her medical team to find a solution to what seems to be a worsening problem.